Sick people across U.S. say they were denied coronavirus testing even when doctor said they needed it

Many Americans who are sick and seeking a coronavirus test continue to be turned away, creating a vexing problem for patients and health officials as the virus spreads. The problem persists, doctors and patients across the country say, despite increased production and distribution of the tests in recent days.

At a time when U.S. fatalities from the virus have risen, there remain limited numbers of tests and the capacity of laboratories is under strain.

The constraints are squeezing out patients who don't meet rigid government eligibility criteria, even if their doctors want them tested, according to dozens of interviews with doctors and patients this week.

The gap between real-life obstacles to testing and President Donald Trump's sweeping assurances that "anybody that needs a test gets a test" has sown frustration, uncertainty and anxiety among patients who have symptoms consistent with covid-19, the disease caused by the virus, but have been unable to find out whether they are infected.

"It's really been unbelievably infuriating," said Remy Coeytaux, a North Carolina physician with a doctorate in epidemiology who tried to get tested for covid-19 but was turned down by the state public health department. He had not traveled abroad, was not sick enough to be hospitalized and had no known contact with an infected person.

At the time Coeytaux tried to get tested, there was only one confirmed case of covid-19 in the state. "It's out there," he said. "But we just haven't been testing."

The federal government's handling of testing erupted as a political issue Thursday, with even members of the president's party venting about not being able to get answers on when the nation would see more see more commercials tests, faster testing and more widely available tests.

[Under heavy fire, Trump administration announces steps to expand coronavirus testing]

Sen. James Lankford, R-Okla., acknowledged that Trump's recent statement about tests for anyone who wants them is "not consistent right now" with what is actually happening.

As of late Thursday, more than 1,300 people were infected in the United States, and more than 30 had died, according to researchers at Johns Hopkins University.

Since mid-January, the Centers for Disease Control and Prevention and other public health laboratories have tested about 11,000 specimens for the disease. The number of people who have been tested is likely far lower than that tally however because labs usually test at least two specimens per person, experts said. In contrast, South Korea has been running 10,000 tests per day.

"The system is not really geared to what we need right now, to what you are asking for. That is a failing," Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases and a member of Trump's coronavirus task force, said Thursday, testifying before the House Oversight Committee. "The idea of anybody getting it easily the way people in other countries are doing it, we're not set up for that. Do I think we should be? Yes."

In an address from the Oval Office on Wednesday evening, Trump said his administration was responding "with great speed and professionalism." "Testing and testing capability are expanding rapidly, day by day," he said. "We are moving very quickly."

States determine who is eligible for public covid-19 testing in accordance with CDC guidelines. In the early weeks of the outbreak, as the CDC struggled to roll out tests, the agency strictly limited testing to those most likely to be infected and most in need of acute care. Even a person with a fever and a cough who had traveled to a country with widespread community transmission - such as China, Iran or Italy - could not get tested unless they were sick enough to be hospitalized.

Amid mounting criticism, Vice President Mike Pence declared last week that with a doctor's orders, "any American can be tested." Trump took that message a step further after a tour of the CDC last Friday, calling the tests "beautiful" and twice declaring anybody needing a test would get it.

The CDC loosened its rules, giving states and clinicians more discretion.

The number of medical professionals and patients who are denied access to tests is not tracked nationally. But in interviews, people from states as varied as Wisconsin, North Carolina, Washington, Indiana and New York said their doctors sought but were unable to get testing approval from local or state health officials.

Coeytaux, 56, a family doctor and professor at Wake Forest School of Medicine in Winston-Salem, North Carolina, came down with a fever, shortness of breath, a dry cough and a deep ache in his lungs last Tuesday, he said. Two days later, he tested negative for flu and 15 other common respiratory viruses. He said believed he was probably infected with the new coronavirus.

A county public health nurse agreed and called the state health department. She handed over her cellphone to Coeytaux, and he explained his situation. "They wouldn't test me," he said, because he didn't meet the eligibility criteria.

Coeytaux said he wanted to get tested to protect not only his own patients but also his partner, who is a registered nurse, and her patients.

Kelly Haight Connor, a spokeswoman for the North Carolina Department of Health and Human Services, said the state is following CDC guidance and sent Web links to state documents that seemed to offer conflicting descriptions of who would be eligible for testing. She did not respond to a request for clarification.

"It's very infuriating for us who work in this world," said Amy Schabel, a public health worker in Milwaukee. "The messaging out there is completely inaccurate and inconsistent with what's happening."

Schabel, 32, returned last week from a vacation to Spain and northern Africa that included a trans-Mediterranean ferry ride with passengers who were noticeably ill, she said. Over the weekend, she developed a high fever, difficulty breathing and other symptoms consistent with the virus, she said.

On Monday morning, she went to an urgent-care center in downtown Milwaukee. Her flu test came back negative, and her doctor said he wanted her to get tested for covid-19. But after more than a half-hour of trying to reach city and state health officials to get approval, she said the doctor gave up.

"Unfortunately, he wasn't able to get a response from them," she said Tuesday, sick and self-quarantined in her home.

By Wednesday, her condition had deteriorated. She went back to the urgent-care center, and this time, she was able to get a test. It would take at least 24 hours to get a result, she was told and still was waiting as of midday Thursday.

A spokeswoman for the Wisconsin Department of Health Services called the situation "unfortunate." On the same day Schabel was turned away, the state instructed doctors they no longer needed government approval to order tests, Jennifer Miller said. A spokesman for the hospital did not respond to requests for comment.

Increasing pressure on labs

Experts say public health laboratories are generally not designed to do high-volume testing. Commercial and academic laboratories - which can test people who don't meet CDC criteria - have only begun processing samples in the past few days, and are still ramping up their capacity. The federal government does not have a way to count the tests that those labs are running, which means federal officials do not know how many Americans have been tested.

Limited testing in the early days of disease transmission not only increases the risk of the disease being spread by people who don't realize they have it, but also affects the ability of public health officials and hospitals to plan for a prolonged outbreak.

"It's difficult to predict the impact on the health-care system in the coming month because we don't have any precision about the burden of disease around the country," said Tom Inglesby, director of the Center for Health Security of the Johns Hopkins Bloomberg School of Public Health. "We've got to close that gap as quickly as we can."

It is not just positive results that matter, but negative results, too. The negatives help researchers understand whether increasing numbers of covid-19 cases are a result of an epidemic or arise simply because testing expanded.

"When we monitor the flu, one of the indicators is the proportion of people who test positive versus negative. That positive proportion gives a very important number in terms of tracking how the epidemic is moving," said Justin Lessler, an associate professor of epidemiology at Johns Hopkins and lead writer on a recent study estimating the incubation period of the coronavirus.

Administration officials have tried to reassure the public they're rapidly expanding access to tests. Last Friday officials said they had shipped 1.1 million tests to labs across the country.

But nationwide, as of Wednesday, the nation's public health, academic and commercial laboratories had the ability to process only about 16,530 patients per day, according to an estimate compiled by former Food and Drug Administration commissioner Scott Gottlieb and researchers at the American Enterprise Institute. That figure is growing as labs bolster efforts and is expected to reach 20,000 per day by the end of the week, according to Gottlieb.

In the meantime, some large research hospitals are trying to bypass the bureaucratic logjam.

"Our access to testing was entirely based on what the state would allow," said Daniel Varga, chief physician executive at Hackensack Meridian Health in northern New Jersey.

Researchers at the hospital began developing an in-house test several weeks ago. The hospital planned to start using its in-house test this week.

Varga estimated that "a handful" of patients exhibiting signs of the virus had been turned down for testing by the state because they did not meet the criteria.

In Indiana, an emergency-room doctor at a community hospital said she had tried to get three patients tested, two of those after the CDC liberalized its guidelines.

Both patients had flu-like symptoms and CT scans that showed lung problems consistent with covid-19, and both were in severe enough distress that they needed to be admitted to the hospital. Both also tested negative for a panel of 20 common respiratory viruses.

But neither had a history of travel or been in contact with a confirmed infected person. In the two cases after the loosened guidelines, when the doctor called the state health department to request testing, the request still was denied.

"Since I watched all three cases get denied, it made me realize that they weren't testing anyone," said the doctor, who spoke on the condition of anonymity because she did not have permission from her employer to speak to a reporter.

Sick and chasing a test

In early March, Marcy Klein of New Rochelle, New York, came down with a fever and a dry cough, just as a coronavirus cluster transformed her Westchester County town into the nation's first containment zone.

A week later, still hacking and taking Tylenol to keep her temperature down, she sought a test for the coronavirus. Though her symptoms were mild, the 64-year-old worried about her husband, a 71-year-old physician with diabetes.

On Wednesday, a hospital nurse told her she didn't meet the testing criteria: she hadn't traveled outside the country recently and she hadn't had any known contact with someone who tested positive.

The uncertainty has left Klein feeling paralyzed.

"I don't want to feel like I'm giving the virus to anybody," she said."

A spokeswoman from Westchester County declined to comment on Klein's experience.

A spokeswoman for Montefiore Health System, Laura Ruocco, said the hospital has had to prioritize patients given the limited access to testing.

In Washington, D.C., doctors repeatedly declined to test a woman who got sick after spending three days with a delegation visiting from her company's home office in northern Italy.

"I realize health care is an imperfect process, but this is just kind of ridiculous," said David Johnson, whose wife has been sick for 1½ weeks with symptoms akin to covid-19.

He spoke on the condition that his wife, an Italian living in Washington, not be identified to avoid complicating her application for a green card.

On March 2, days after the visit, his wife came down with a fever, body aches, congestion and a cough. Since then, she has gone three times to an emergency room at MedStar Georgetown University Hospital. She has been unable to persuade anyone there to test her for the virus because she had not traveled to Italy and could not confirm she had been in close contact with anyone who had tested positive, her husband said - though she later learned that an unidentified person from the home office had.

She tested positive for a trace amount of the H1N1 virus - a form of flu. But when the couple asked whether that meant she could not have covid-19, they said they did not get an answer.

Told of the woman's attempts, a MedStar Georgetown spokeswoman, Debbie Asrate, said Thursday that the facility "has been working closely" with the CDC and the District's health department.

In the District, people can be tested by the public health laboratory when they are showing symptoms and have a known exposure to a laboratory-confirmed case of covid-19, or have traveled to one of several countries with widespread transmission, or are living in a long-term care facilities, said D.C. Health Director LaQuandra Nesbitt at a news conference Wednesday. She said health-care providers can get other people tested by sending their samples to commercial labs.

"From an epidemiological risk perspective, she absolutely should have been tested," said Jeanne Marrazzo, director of the Division of Infectious Diseases at the University of Alabama at Birmingham. "She was in close contact with visitors from the epicenter of the epidemic."

On Wednesday, 10 days after she fell ill, she was finally able to get tested at a D.C. urgent-care clinic. She was told it would take about four days to learn the results.

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The Washington Post’s Andrew Ba Tran and Fenit Nirappil contributed to this report.